On Vision: A Thanksgiving
“In our minds, in our bones, in our viscera, sight is the unrivaled monarch of the senses.” Frank Bruni, The Beauty of Dusk: On Vision Lost and Found
It’s been nine months since I jumped into a swimming pool in California and couldn’t see my hand in front of my face underwater. When I emerged, I attributed the cloudy blur in the center of both eyes to the temporary effects of chlorine. But it didn’t go away; it got worse. Driving the following day, I couldn’t read street signs. Playing a card game at night, I couldn’t distinguish the blue cards from the green and red ones. Walking on an uneven sidewalk, I stumbled, my depth perception off. In less-than-bright light I couldn’t distinguish dark items on a dark countertop. When I tried to read on my iPad, even after expanding the font size the letters swam, some replicating and some departing; sentences coursed across the screen at a tilt.
I viewed my world through a Vaseline-smeared, cracked windshield that I couldn’t clean. These symptoms would be hard for anyone, but as a writer (and avid reader), I felt particularly burdened. I spent all my energy just seeing. “The gumbo of my vision made a soup of my thoughts,” writes journalist Frank Bruni in his memoir The Beauty of Dusk. Bruni, who has impaired vision due to optical nerve damage from a stroke, writes eloquently about his losses and gains after the sight in his right eye became a shapeless blur, with the risk that his other eye could someday be similarly affected. I’ve tracked his discouragement and enlightenment avidly, hoping to glean lessons I could use.
“If you imagine the retina as a circle with a bull’s-eye at the center, the macula is like the bull’s-eye….” San Franciso Retina Foundation, For My Patient: Macular Degeneration
Three weeks after the swimming pool, a retina specialist in Michigan, Dr. Edward Korot, diagnosed wet age-related macular degeneration (AMD). This disease is related to the more-common dry AMD, but is usually more debilitating and is rarer: Only 10% to 15% of people with AMD develop the wet form. In wet AMD, abnormal blood vessels grow under the retina, lifting it up like tree roots that grow under a sidewalk and raise the pavement. These vessels leak fluid and blood that reduces and distorts the central, detail vision controlled by the macula. My bull’s-eyes were failing me.
My symptoms were typical of the disease, as was its sudden onset after age 50. When Dr. Korot showed me the cross-sectional films of my retinas, I could see my right eye’s retina bumped up by fluid into a volcano shape. The left was less dramatic, more of a sledding hill.
Wet AMD has no cure. Before 2006, afflicted people often went blind. Now treatments can halt its progression, and can even partially restore lost vision for some patients, by preventing new blood vessels from going rogue. If no new fluid is being produced the body can gradually absorb some of what’s already ruffling the retina. Dr. Korot began treatment at that first appointment: topical numbing of the eyeballs, then an injection of medicine into the white of each eyeball with a small needle. I swallowed hard and said, “Bring it!”
Seven injection treatments have yielded extraordinary results. The volcano is flattened and the sledding hill, nearly so. With ordinary corrective eyeglasses, my vision went from 20/200 (legally blind) in my right eye to some version of 20/25, and is now consistently 20/30 in my left eye. I still have a symptom called “low contrast sensitivity” that can’t be corrected. My eyes have trouble distinguishing objects from their backgrounds in dim light and require bright light to recognize contrasting colors. I can’t see at all when I enter a dark place from a bright place; my retinas adjust slowly and incompletely. My depth perception is compromised, flattened. I don’t drive at night. Nonetheless, by the specialists’ measurements the treatment is a smashing success. I’m elated, beyond grateful to have come so far from that California swimming pool.
“[W]e have second selves…to rescue us when our first selves are compromised or killed off.” Frank Bruni, The Beauty of Dusk: On Vision Lost and Found
I’ll continue these treatments for the rest of my life. Dr. Korot says a time could come when the drug he now injects will lose effectiveness. There is another drug to try, but I’m mindful every moment that my good luck might not last.
I’m mindful, too, that my restored vision is imperfect in ways most people can’t relate to. “I don’t like driving at night, either,” some say. For me it isn’t a question of liking it or not; I simply cannot do it without risking various Mr. Magoo-like catastrophes.
Like Frank Bruni’s, my vision problem is largely invisible. My eyes don’t look any different to observers. I’ve developed pragmatic and low-key workarounds for low-vision situations. As a result, almost everyone I know forgets what I have, even my husband. He asks me to look for something small at the back of a closet. He turns off lights, and if I enter that room shortly afterwards, I can’t see. He strides ahead through a paved parking lot at night, forgetting I might need to take his arm so as not to trip.
I hadn’t contemplated that one of the outcomes of coping well is the invisibility of the effort. Bruni calls it “the camouflage of normalcy.” “I wouldn’t know anything was wrong,” people say; they mean to compliment me, but sometimes it feels deflating.
In some ways, my vision is sharper. I like to think I understand disability a bit better: the invisible health struggles of so many people my age; the apprehension of waiting to see if a condition worsens; the glory of a good day; the need to push –hard-- to live more in the moment. I see that there are many paths one can take to meet loss face to face; we choose which one to travel. I appreciate more the consoling nature of my other senses: bird songs from warblers I can’t see; the smell of crisping autumn leaves on rough terrain I can’t easily navigate; the feel of a cashmere scarf against wind that dries my eyes. I know the pride of taking on, to use Bruni’s language, “difficulty as a dare.” I’ve become more impatient, but also more patient: More impatient to finish playing before it gets dark outside, more patient about other people’s worries and losses. Because I sometimes need help, I’m sometimes more apt to give it.
My vision for my writing also has sharpened. With corrective lenses, magnifiers, and techniques to manage dry, tired eyes, I’ve got outlines, goals, a renewed drive. I’m a slower reader and writer now, but more thoughtful about the words on the page. I hope it’s made me a better writer. I’m writing for my life, praying the curtain won’t fall before I finish the scribbles of this second self.
Frank Bruni wisely notes, “We have no control over what happens to us. We have enormous control over what happens to us.” Yes. And Yes.